Electronic patient records and the paperless NHS

In 2013, Health Secretary Jeremy Hunt pronounced that “the NHS cannot be the last man standing as the rest of the economy embraces the technology revolution… only with world class information systems will the NHS deliver world class care.”

With that, he laid out his ambition for the NHS to be ‘paperless at the point of delivery’ by 2018. That deadline has since been revised to 2020, but the programme received a shot in the arm earlier this year, with the announcement of £4 billion worth of funding towards new equipment, digitisation of records, new online services, healthcare apps and cyber security.

However, getting the health service to go digital has been a goal of government since at least the 1990s. Is a paperless NHS viable and, as we reach the halfway point, is it on track?

Why paperless?

The programme can be seen as having four separate objectives. Firstly, it is about making the NHS more transparent and responsive to the needs of patients, by giving them online access to their records and encouraging their involvement in managing their wellbeing. Moving services and advice online will save an enormous amount of time for both patients and doctors, and enabling patients to update their own records will increase their engagement with the NHS and build stronger patient-doctor relationships. Looking forward, it will also make the most of advances in wearable devices and other technologies, which will provide data to supplement doctors’ records.

Secondly, digitisation will enable healthcare to be much more effective. The NHS, perceived by the public as a single organisation, is actually comprised of a host of different bodies, none of which are particularly good at talking to each other. Patient data is kept in departmental or organisational silos, which are difficult to access from outside. Most records are paper-based, and paper records can only ever be in one place, so information sharing requires duplication, time-consuming transfers, or both. Paper documents are also easier to lose or misplace. Decisions in the NHS are literally life and death matters, and quick action is often paramount, yet GP records aren’t usually available to hospital doctors, visiting nurses can’t see doctors’ notes, and paramedics arrive at emergency situations with little or no information. Electronic patient records, accessible from anywhere in the organisation, will ensure that healthcare practitioners have the right information at the right time. Decision making will be improved, and with it, clinical outcomes.

The third objective is greater efficiency. The NHS faces a budget shortfall of £30 billion by 2020, which must be made up by efficiency savings and productivity improvements. According to a recent review, up to 70 per cent of a junior doctor’s time is taken up with paperwork, and a single shift in an acute trust hospital generates enough paper to fill a family-sized bookcase. Electronic records will reduce that burden considerably, by making it easier to locate data, speeding up information transfer and eliminating duplication. There will also be a reduced need for storage space, estimated to cost between £500,000 and £1m per year for each NHS trust.

Finally, digitising NHS data presents an unprecedented opportunity for big data analytics to identify the most effective use of resources and to improve the targeting of healthcare initiatives. This aspect is controversial. Some doctors and patients fear that giving third parties access to this data is the thin end of a wedge, and that it could lead to marketisation of sensitive information. The care.data initiative has been halted to allow issues of confidentiality, pseudonymisation and patient permissions to be sorted out. Nonetheless, there is the potential for NHS data to become a rich resource for medical research, to the benefit of all.

What’s different this time?

Unfortunately, large government IT projects are not synonymous with success. The paperless NHS programme was announced before the ashes of the NHS National Programme for IT (NPfIT), probably the most infamous and costly public sector IT failure in history, were even cold. NPfIT, launched in 2002, should have produced a single, secure system of electronic patient records for every GP and hospital in the country. Forecast to cost £2.3 billion over three years, the total had reached over £10 billion by the time it was abandoned in 2013. The goals of paperless NHS look very similar to those of the NPfIT. Is that where the similarities end?

NPfIT was a huge, centrally controlled project which attempted to impose top-down standards on the entire NHS. This time around, the government has encouraged bottom-up development. This recognises that different parts of the organisation have built their own solutions over the years, and that the important task is to connect them, rather than replace them with a one-size-fits-all initiative. Healthcare providers are free to engage services at a local level, with the Health and Social Care Information Centre (HSCIC) – the national provider of information, data and IT systems for health and social care – restricted to providing guidance and key standards for interoperability.

Thus far, the focus has been on GP services, and impressive progress has been made. Electronic Summary Care Records have been created for over 55 million people, from patient data held by GP surgeries. In the year to April 2015, the number of surgeries able to provide registered patients with online access to their records increased from 3 per cent to 97 per cent. An even higher percentage can provide services like appointment booking and repeat prescription requests online. For the moment, these efforts have had little impact: only 0.4 per cent of patients had actually accessed their records and just 12 per cent of appointments were being made online. Research from Citizens Advice revealed that over half of patients were unaware of the new services. Younger people, who tend to favour digital access, were least likely to know about them. The next step must be to publicise and promote the availability of digital access.

It made sense to start with general practice, since most of the population is registered with a GP and visits to the doctor make up the majority of our interactions with the health service. With this stage complete, the difficulty now lies in linking these records to other parts of the NHS, and supplementing them with information held elsewhere. There is an astonishing amount of data available; when the Pennine Acute Hospitals NHS Trust commenced its programme of digitisation, it predicted a need to scan 100 million records within the first year (275,000 per day). However, hospitals should learn from the experience of GPs, by looking to provide some functionality as early as possible and building from there, rather than becoming bogged down in processing old records.

Camden and Islington NHS Trust is an early example of a successful implementation. The Camden Integrated Digital Record (CIDR) links 36 general practices with two hospitals (University College London and the Royal Free), mental health services, social care, and other partners. Some records may be incomplete, but this can be rectified over time. The next challenge is to coordinate with other trusts, so that data can be transferred when an individual moves into or out of the area. The lack of cohesion between trusts is a drawback of the bottom-up approach, but open interface and interoperability standards allow this to be addressed without the need for all trusts to move at the same pace.

All NHS organisations have created roadmaps for achieving paper-free status by 2020, and undergone self-assessment of their progress. Assessment results are published in NHS England’s digital maturity index. According to the index, most trusts believe they are making good progress or better in their readiness to deliver digital systems. The majority also report good progress putting the necessary infrastructure in place, but have much more work to do on capability. Overall, this is good news, but the reliability of the assessments is open to question: Camden and Islington, already live with its CIDR, has a capability score of 53 per cent; many other trusts that have awarded themselves similar scores have yet to implement comparable services.

All things considered, the NHS has made good progress over the last three years. It appears that the greater part of the service will make the jump to paperless systems in time for the 2020 deadline. Nonetheless, work to improve the functionality of systems, and the links between them, is likely to continue for some time afterwards.

Furthermore, many of the principal advantages of digitisation – service improvements, efficiency savings, and better research and analysis – will probably be realised well after 2020. This may be a revolution, but it’s a slow one.